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Mocha Autism Network

GUEST POST: Autism Awareness Should Be About Action Not Reaction by @marimouth 

4/4/2014

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Guest Blogger: Mari Nosal M.Ed. CECE
Also Posted on the Mari Nosal Website
 
 




 
Autism Awareness month is upon us. What is awareness all about? I will start by posting a definition of awareness that I have mentioned in another post as well.


According to the Merriam Webster Encyclopedia, awareness means: “knowing that something (such as a situation, condition, or problem) exists.”
Knowing that something exists, is not quite the same as fully supporting the issue. An example would be that we may see a homeless individual on the street and feel some empathy for there dilemma. This is an example of awareness of a situation. An individual may express concern for the homeless person’s situation, yet walk by them and go about their day. Rather then walking away, the individual who acts upon their concern and offers the individual a cup of coffee, etc. has learned from their level of awareness and used their knowledge to take action.

This said, I will not focus on whether an individual wears the color blue, which I am aware many individuals connect with Autism Speaks and present negative connotations towards this group. I do not care if an individual is wearing blue, orange, gold, or polka dots for that matter.

We may be surprised and find that the meaning of wearing blue for one individual during autism awareness month may not fit ones preconceived notions. I attempt to look beyond the colors and witness the individual’s actions and character as first and formost.

In not doing so, I would be presenting myself in a judgmental fashion akin with grouping African Americans, Asians, Caucasians, Indians, etc. into a preconceived belief system. Example in point: All Asians are not smart, all Indians are not rich because of casinos, all African Americans do not play basketball, and all Caucasians are not money hungry baseball lovers. I would be acting in an archaic manner and stepping back into another century where prejudice ran rampant in harboring these notions.

In the same fashion that “if we have worked with one autistic individual, we
have worked with all autistic individuals” This is a phrase that I personally abhor as there is a reason it is called the autistic spectrum. It is called a spectrum because there are are many different degrees of autism. This ideology is an example of a preconceived notion as well.  Individuals on the autistic spectrum present with varied personalities and needs, just like typically developing individuals do.

To take the idea of preconceived notions a bit further. One may assume a color is symbolic for a group or belief. For another individual, that color may symbolize something totally different. I will continue to favor the color blue because it is symbolic of something very different in my eyes.
For me, the color blue symbolizes promise. As I peer into the sky I see spring approaching after a gray dismal winter. I see a beautiful blue horizon that has taken on a distinctly sharper more vivid hue then was evident in the winter sky. While peering at the Spring sky, I see promise of green grass coming back to life, the return of birds tweeting outside my window.

In conjunction with autism, I connect the blue horizon that extends for miles into the atmosphere and over the ocean with realization that the autistic spectrum knows no boundaries. As the horizon is spread across the whole world in areas where our eyes cannot peer, the autism spectrum holds secrets that we cannot see. It holds the secret to individuals futures that we cannot see.

We do not have a crystal ball. i.e. a child that was not supposed to speak, ends up doing so, a child who’s parents were told to institutionalize them suddenly gains an awareness of their surroundings that no one expected, the child who was not supposed to toilet or self feed independently miraculously does so. As the horizon connects us all together although we are not aware of the activity on the other side of the world, our children have a future path that we are not aware of.

As you can see, blue possesses a different meaning for me then it does for someone else. Lets get to know each other before making judgments. Focus on the advantages of autism awareness month. Breed awareness through your actions not preconceived notions. A color will not change the world but making a difference will. Help a family who is overtired from caring for children on the autism spectrum. Help the family do chores, watch their special needs child so they can get a few hours of uninterrupted rest or enjoy a cup of coffee alone at a restaurant.

Help an adult on the spectrum who cannot drive by giving him a ride to work or elsewhere. Offer to help him or her compose a letter if they struggle with writing skills. Teach a parent support class, offer to teach life skills for free to transitioning young adults. These are mere examples of focusing on not only awareness but acceptance and education for the autism spectrum as well.

Last but not least, do not stop with only making contributions during autism awareness month. Continue helping society to become accepting and a place where all on the spectrum can live, work, love and play 12 months of the year. For families and individuals affected by autism, autism awareness is a 24 – 7 life for them.

The blue lights in the Empire State building, the rivers tinted blue, (or gold or purple for that matter) will dissipate and soon be a memory. Your efforts within the autism community will make a lasting impact however. Parents and individuals affected by autism will still be living with it after April is nothing but a mere memory. As families and individuals live with autism seven days a week, let’s make a pact to stay action oriented seven days a week as well. Keep your focus on the goal. When there is no more blue what will you do?

Thank you and let’s start advocating.


About our Guest Blogger: Mari Nosal M.Ed. CECE is a published author and focus on books pertaining to autism and Aspergers Syndrome. I have recently published a book with curriculum ideas for inclusive and multi age classrooms.


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April 3: #RoyalBlueForAutismAwareness Assessment and Beyond 

4/4/2014

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On April 3rd, we posted sites That will help determine diagnoses and overcoming the "What's next" feeling parents get... we also found a great blog post. 



  • "ASD, ODD or ADHD? Which is the Best Fit?" With certain children, it can be hard to tell the difference between an Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and Oppositional Defiant Disorder (ODD). 
  • Autism Symptoms & Early Signs As a parent, you never want to believe that your precious bundle has a problem. But when it comes to autism, catching it early—ideally by the age of eighteen months—makes a huge difference. 
  • Putting an Appropriate IEP Team Together IEP Team members change frequently and it’s amazing how adding or removing one person from the IEP Team can make a huge difference in the quality and implementation of an IEP. While the Parents are not normally in control of the IEP team members from the School, there are methods the Parents can use to add or remove members.
  • BLOG: "It is OK to Wear Blue, But What Will You Do?" I have witnessed rivers tinted blue, blue signs in windos, individuals who colored their hair blue, wore blue clothes and more in the name of supporting autism awareness. Their intentions are good and appreciated. However what is awareness?   

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April 2, #WorldAutismAwarenessDay Links

4/2/2014

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April 2nd, we shared links from around the world. the goal was to showcase the Diversity of Autism Awareness. Here are the links and articles shared: 




  • The Autism Society of Kenya is a parent-driven initiative founded in the year 2003. Prior to that, knowledge of autism in Kenya was non-existent and, as a result, children affected with the disorder remained at home and young adults were placed in mental institutions. Desperate for answers, Felicity Nyambura Ngungu, grandmother of a young adult named Andrew Safari Ogolla, decided to forge ahead -- despite many challenges -- to remedy the situation. Through her tireless efforts and sheer selfless determination, ASK grew to its full potential, benefiting not only her own grandchild but all other children and adults on the spectrum in Kenya.
  • Autism - Living It  In view of this highly misunderstood condition and it being World Autism Awareness Day on the 2nd of April, Mrs. Amina Asad, who is a member of UAE Mums Group  and whose child has Autism, has kindly accepted to lend her insights on what it encompasses and the impact it has had on her and her family. I appreciate and thank her for coming out on such a personal issue for the sole purpose of enlightening us. 
  • A Psychologist's Perspective on the Taboo of Autism in Nigeria The level of awareness about autism in Nigeria is low. There is some awareness among those in the medical community, but the extent of their knowledge is often limited. Most only know the symptoms and manifestations of “infantile autism”. The majority do not know that there are different forms of autism spectrum disorders (such as regressive autism).
  • Jamaica Autism Support Association provides information data and resources to the people of Jamaica 
  • Autismo Diario is a great spanish language resource page. It is a great reference for newly diagnosed families and those that want to help. 





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Diversity in #Autism Awareness is more complicated than a slogan or the protest of one

4/2/2014

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This being World Autism Awareness Day,  you will look around the web today and see a wealth of information regarding Autism . You will See Autism Speaks and "Light it up Blue" A LOT.  You will then see follow up emails, Twitter posts and Memes telling you what's wrong with Autism Speaks and the Light it up Blue Campaign. 

The argument is that Autism Speaks doesn't have a platform for actual people on the Autism Spectrum. The founders of Autism Speaks don't seem to assist people "on the ground" on the spectrum. I understand the argument.  I also understand why people want to boycott the organization and their "Light it up Blue" campaign. The arguments I actually hear (without being yelled at) are valid and should be addressed. I don't engage because I don't believe I should put such effort in groups that don't put equal effort in people like me. 


Bay Area Proper (the area from SF-Stockton) doesn't have Autism Speaks or any "Mainstream" Autism organization.  And realistically, if there was, People of Color rarely reap the benefits of such programs. The Mocha Autism Network  was formed out of the need for resources for unrepresented communities. We are generally ignored by awareness groups, regardless of the cause.  Autism isn't any different. Lack of diversity doesn't seem to be mentioned by either side.  Black/Brown Communities are the least informed and most misdiagnosed. Our need for outreach AND information is crucial. 

The #RoyalBLueForAutismAwareness campaign was contacted by RealZetas.com, a media arm for Zeta Phi Beta Sorority, Incorporated, to help provide awareness throughout their Electronic Footprint and we accepted. #LightItUpBlue was added to maximize reach and awareness. Our communities know slogans and it will spark interest in the other facts we will provide. We heartily accept their assistance and support. 

We have all the time in the world to discuss the best course of action in providing information to the children that are missed by mainstream awareness groups. Please feel free to submit a piece or ask us questions.



Monika Brooks
Mocha Autism Network


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While You Were out, April 1: #RoyalBlueForAutismAwareness Stats

4/1/2014

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On April 1, We kicked off the  #RoyalBlueForAutismAwareness 

campaign with the stats that we are working with. So here is what we called our FIRST DAY FACTS: 



 


  • 1 in 68 children are currently diagnosed on the #autism spectrum.
  • By gender, it is broken down as 1 in 42 boys, 1 in 189 girls.
  • Black/Latino boys are diagnosed as late as 2.5 years later that White boys.
  • Girls (all ethnicities) are diagnosed the latest.
  • In California, 10% of pediatrician are equipped to provide Autism assessments in Spanish.


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